A chronicle of my family’s journey through diagnosis of biliary atresia and eventual liver transplant. Now, traversing the life of a transplant family, I talk about parenting four kids, biliary atresia awareness, writing, and whatever else comes to mind.

Sheriff Sarah

Thursday, February 9, 2012

ALT. GGT. AST. EBV. PTLD. Residing in the world of liver transplants can leave one's head spinning from the number of acronyms in daily use. I thought they used a lot of acronyms in the aerospace industry!

These letters all mean something. The first three combinations - ALT, GGT, AST - tell the liver story. If they're in the lower range, everything is running smoothly. If they jump upward, then there is the possibility of acute rejection.

EBV - the Epstein-Barr Virus (also known to us as mono), is common in most human bodies but can be lethal to a transplant recipient. When this number shoots through the roof (30,000+), complications can arise, including PTLD.

PTLD - post transplant lymphoma disease - is one of the potential adverse affects of immunosuppression. This cancer if detected early can be treated proactively and is not life threatening. Still, the fact it IS cancer is enough to scare every liver parent out there.

My reason for the very brief (and hardly complete) explanation of these is that this week Sarah's liver numbers elevated; her EBV rose to above 2,000; and PTLD returned to our vocabulary.

Thankfully, as of today, Sarah's labs improved removing the need for a scheduled biopsy Thursday afternoon. The EBV came back negative, so no immediate concern there. All that remains is PTLD. The docs orders a CT scan when the ultrasound discovered swollen lymph nodes in both Sarah's neck and stomach. We have to wait for the oncologists to review the scan Friday before PTLD can be completely eliminated but one of our transplant doctors seemed fairly certain the swollen nodes were not the result of PTLD. We return to "wait and see" mode until Friday around 10am. I'll be posting results on Facebook and here, time allowing.